Firstly thank you to all on here who have been so supportive and helpful through the diagnosis and pre op chemotherapy journey. The support and advice has been so helpful and I have learned so much from the experiences of others.
Chris, my husband, had his op on 16 April, surgery went well and was completed more quickly than I expected. A bit of a blip with heart rate meant he stayed in ICU for a few days but was discharged and came home on day eight. He was amazingly well …… no problems moving around, climbing stairs or bending etc. Eating softish food without problems ( no feeding tube) …. not too many problems with dairy or sugar so far. Tired obviously and needing regular rests. The only blip … bit of a urine infection and a badly leaking drain needed redressing.
Progress has continued well and he’s already mowed the lawn 
FAST FORWARD to yesterday and our follow up. Cancer was removed but margins were less than 1mm and 11 nodes out of 37 removed showed evidence of cancer. Much more advanced than any of the scans had suggested. Apparently Chris had already been discussed at MDT meeting who decided no further treatment. Chemo had only shown partial response we think and the last round had caused neutropenic sepsis. The surgeon has said she is asking the team to reconsider no treatment and to use radiotherapy …. Chris and I want this as he was also willing to continue with post op FLOT come what may.
Has anyone any positive thoughts around this diagnosis? I really need some.
I feel angry that a decision around treatment did not include us but was left to the surgeon to try and explain. She clearly doesn’t agree possibly because she saw how well Chris is doing now compared to when the oncologists saw him last. Oncology is at another hospital. I welcome your thoughts.
Geraldine xx
Further update. Oncology team don’t want to offer post op FLOT as the tumour regression score was 4 ….. v little response to chemo. They say it will have no effect and want surveillance instead. und
stand the logic but don’t understand why it’s offered in other hospitals to people with the same score. Another appointment on Monday to discuss …. oncologist will also speak to radiologist. Can’t be all this indecision
